I think a milestone should be added today to this blog. My son graduated Jr. High, will be a freshman next year and had a 4.0. For a kid who could not put two words together during pre school, this is a milestone.
He talks, he talks too much, he is popular, words that if you had asked me 10 years ago, I would of said how, he never speaks a word to any of his class mates. He has tons of friends today. The selective mutism never came back, but there are still hangovers to those days. He is a perfectionist and it is his way or the highway.
He will be a teacher, lawyer or preacher when he grows up, his word are so spot on. The kids at school call him Dr. >>>>, like Dr. Phil since he can tell them what in their life is not working and get them on the right track. Parents call him the voice of reason. They always know they can go to him to find out what really went on. Words are a big part of his life. He is a very good writer. It comes easily to him. Sometimes I think for all the early struggles, it should be easy. Time will tell.
I still sit in amazement at how far we have come and how many paths we went down. Always fearing every grade that it would re-appear, luckily it did not. How many teacher I had to train on what it was. How many feared it and tried to put him in a ” special class”. How many were annoyed that they would have to have a child with Selective Mutism who turned out to be gifted.
So instead of going down the path they wanted him to go, I had to bully my way up. I mean fight hard for him, fighting with the school administration, talking with state administrators who did not want to fund his alt test. Funding it ourselves and finding out we were right all along.
The point was he was not mute and dumb, he was selectively mute and brilliant. People have to learn the difference. Einstein did not speak until he was 5. That piece of info carried me through many a dark day. Helen Keller was blind deaf and mute, but not stupid. My son did not speak at school, but did at home, so I saw different child then they say everyday.
So my advice and why I wrote this blog was to help others, since I had no road map. Do not give up on your child, Dont’ ever give up, follow your gut, and do what you can do to make it right.
I am always so grateful to see how our families story with selective mutism is helping other families. I noticed that I have a lot more teachers coming to the site looking for advice for teaching a student with selective mutism. It seem more and more common these days. Here is what I wished I had known and been able to tell teachers of how to interact with a selective mute child.
So here is my top 10 for teachers.
1: Believe the parents when they tell you the child has the condition. It was so important to have people who were helping, than those who were convinced it was something else.
2: Try many options. Try parallel play. Take a speaking child who does not care if the child does not speak and let them play side by side. Do not try to have them interact, that is too stressful for the selectively mute child. Patterning play side by side seemed to work well for my son.
3: Have lots of play dough or things for the child who is mute to interact with. My son played with play dough every day for hours. It made him happy. He was listening to everything going on around him, including teacher class lesson, but was not able to sit and do regular sit and be taught process. He would tell me what the teacher said that day when he came home. The teacher was always surprised to hear how much he had retained, since she thought he was just over in a corner playing with play dough and was not paying any attention to her.
4: Tell the child that you know they are answering you, just in their head. My son actually told me he answered every question, just in his head. So do not assume they are incapable of answering you or they are not paying attention.
5: Try having them write out or act or signal out what they want. My son would do anything you asked him to accept he was unable to speak in the school setting. So don’t give up assuming they can’t and won’t. There were certain words even with me he could not say, so he would spell the word instead of saying the word or use another word. We learned what his signal was for “I am uncomfortable”, for him it was that he would pull on his eye lid. This gave us, teacher included, a heads up and was able to take steps to lessen the stress of the situation for him. Be sure to tell them in advance, if there is going to be a change of routine. Don’t spring things on these children, they do not adapt well. Such as a change of teacher, sub, going to another room for testing. He would retreat even more, if changes were not told to him in advance. I would have the teacher every morning, go through the day, verbally with him. If the teacher was going to not be there, I would tell him in the car and outline the day. If he was told in advance he was fine, if not it was a terrible upsetting day for him.
6: Find out if and when the child will speak, my son could speak very well when in the house. So I would take the work each day from the teacher and do it with him verbally, so it would be reinforced.
7; Don’t assume the child is developmentally delayed or autistic. Actually, most are very to highly gifted. Remember Einstein did not speak until he was five. That statement kept me going for many years when he had the condition.
8; The condition can and will go away in most cases or at least diminish. Give it time, it is on their clock as to when this will change and not yours. It can take many years. So don’t think you are going to “cure” them.
9: The selectively mute child hears everything you say, so careful what you say and to whom you say it to. Do not talk in front of the child as though they are not there, they are not deaf.
10: Recommend the child be placed on a 504 plan/ IEP and be tested for gifted and explain to the parents the advantages and disadvantages. These children need more exposure, not less. This was not done for my son and I wish it had. We have one now for my older son with Tourette even in High school, he is an honor student, but still needs accommodation and services to support.
10/09 update: I want to add a clarification to being put on an 504 / IEP. This does not mean pull the selective mute child from classroom and put in a class with lower learning identified. This means making accommodations in a main stream classroom and higher. These students need more and faster, not less and slower. As soon as we got the gifted designation, we had him moved to classes for the gifted on subjects they offered it in and then he went back to a regular class for all other subjects. This gifted class worked well since it was a smaller class number and he was being taught at an appropriate level.
That was always a battle with the school, since they only taught one year above class level even in a gifted level. They indicated that the class curriculum strings were wider for the gifted program and thus covered the extent they needed to under the law. My point was teach to his level, not to the minimum you are required to do for gifted students. That is why I looking back I should have put him on an IEP/ 504. To force the school to educate him as needed, not as they wanted.
I have written this blog to chronicle for others the paths we took with our son who had Selective Mutism, it starts at the bottom of the posts and reads up. I have recently asked my son of what he remembers about the condition and would he remember at all that he was selectively mute?
It turns out he does remember and he remembers it in pieces, but not all pieces. He remembers not talking in school, but not that we took him to a psychologist. He remembers that we tried a lot of things, but is not sure what we did. He remembers teachers coming to visit at the house, but he did not remember that we had a family member who was a school teacher come to observe him in the classroom setting. It is a real patch work of memories.
I also came across a picture of him with other students in his preschool the other day and the blank look on his face was clearly there, and he was participating by hitting a pinata. This was so typical of a selectively mute child to participate but in silence. His face changed dramatically from happy engaged child driving to school to a blank expressionless zombie face every day he was in pre school.
He remembers it as the way he was, he remembers clearly when the mutism broke. He remembers when the things broke on the table and from that time on he could speak.
I will ask him to chronicle it from his remembrance when he is older. Someday I will ask him to add to the blog. But at the moment he is not looking back and his future is very bright. He already in jr. high knows he wants to go to college at Standford or Harvard and we know he has the will, the brains and the voice to get there.
When I started this blog I never imagined it would have as many who seek it out or that I would have so much to tell on the subject.
So yes we did remind our son that he had selective mutism and he was not bothered in the least.
Be sure to start at the beginning of the Archives in Feb and read forward by month to get the full picture of selective mutism, what happened and how it was overcome.
The next day with gifted letter in hand, I cautiously went to drop it off at the principals office. Since I had already had many meetings that were fruitless with her, I was sceptical, but hopeful. I handled the letter stating he was designated gifted and she looked at it and said, OK we will have him moved into the gifted class tomorrow and your will have a IEP written and to you within the week.
It was so sweet music to my ears, after all the years of no’s, all the …we will not move him, we cannot move him, we will do nothing more. To hear yes…. and with action steps. The hours and hours, the meetings and the delays were finally worth it.
The parents who told me to think of the gifted and IEP designation as Ruby Red slippers was correct. It was exactly what he needed. He moved classes and he did great. He did more than great, he thrived instead of dying under a system of bureaucracy. A system that is focused on no child left behind, was failing since they were leaving my child behind and it did not seem to phase them, since he was above grade level they felt it was not needed. He was smart, he just had anxiety and had selective mutism in his younger years.
The question was, once he spoke at school, if we should push him up to higher class in the same grade level and would he revert? It was what we thought he needed, not what the school policy was. We were right, our gut was right. We did act and give him the chance to succeed and we did push and it was worth it for him. Trust your gut when it comes to your child.
The push was the right move. The expense was worth it. He was pulled out for reading and math and non verbal and continued in his regular class room. He was still way above grade level. There was a gifted only school in the district, that they suggested we look at sending him to. We felt it was better to have him be socially comfortable. This also proved for him to be the best combination. Once you have the designation, you stay the program, unless the grades or behavior deems that they will not place them the next year. He was placed in the gifted program every year. The Gifted IEP that was written with accommodations made all the difference.
It was suggested that he skip a grade and be moved up a grade to be taught at that grade level. We rejected that as an option, since he needed to be with his own age group for social aspects.
We finally decided the only thing left to do and not loose another year was to have him tested privately for gifted designation. It was very expensive, over $1200. We reluctantly asked my parents for the funds to have him tested, since this could of turned out to be spending good money and a lot of it and not have him qualify for gifted. After all that we had been through and all the dollars we had already spent on the paths with selective mutism, it was a risk we needed to take.
I learned there are three areas that a child can be tested designated gifted and each one qualifies for different services. The first is verbal. ( Reading ) Second is quantitative, (math), the third is non verbal, (spacial). The leap for our state was an 97% or higher to qualify in on any of three areas. Under 97% you do not qualify. This means that he needed to pass the test in the top 3 percent, he could be designated in all three, only two or just one.
We asked around and found several councilors that would give the tests, some at the university and some centers that treated conditions such as ADD and also tested for gifted. I also had to figure out how many of the test they were qualified to give, if the state would recognized their administering of the test and it turned out to be that only one that fit all my criteria and could take us within a short time frame. Many of these centers where booked up for 6 months or longer.
The councilor was a Phd and wisely insisted on a couple of session with my son and one with my husband and myself before administering the test. She openly told us, that since he did not pass the schools gifted test that she say many that had to do what we did and have him tested privately. There was no guarantee he would pass or qualify.
He went into the room to take the tests, it was 2 hours before he returned. We where told he has passed in both verbal and quantitative. There was a great deal of satisfaction to know we where correct all a long. To have it validated was so gratifying. It made all the barriers, and all the brush offs fade away. We knew he was gifted, we just could not get the school to agree and make the correct decisions, they were so clouded due to his past selective mutism issues and would not do anything without that piece of paper and passing a test. We were given a letter and told to give it to the school, that they would immediately need to accommodate. Was it really the “Ruby slippers” to his educational needs? The next morning I would find out, here I come with the letter in hand.
I think one of the areas that we relied a lot on teachers advice for was on the question of should he have the work up and qualify for an IEP or 504 plan. I heard from parents that have children with disabilities or other conditions that they were put on a 504 or IEP depending on the condition. The parents called it the “ruby slippers” to getting the educational needs met of their children. Basically it gave them the legal standing to make or in some cases force accommodation and educational tailoring with in their school for their child.
What the teachers failied to tell me when I asked about 504 or IEP, was that I was asking for the wrong accommodations. My son was very bright, he was a good student in their mind, so thier advice to me was why label him, and therefore they recommended nothing should be done. They would make thier own accompations in the class room. That is what I heard year after year, teacher after teacher. Oh no … you really don’t want to do that, don’t label him, he is too bright.
In the spectrum, I learned in most cases the IEP and 504 are for lower performing or those needing accommodation. What I finally learned is that I should of been asking for was a gifted evaluation. Why the teachers did not say anything is interesting. I learned later they don’t like to loose their brightest students out of their classroom and wanted the opportunity to teach him. But it just was not working and he was not getting the education at the right level. Now he was so bored and we where loosing his attention.
I talked with other parents to figure it out. I later learned you can be designated gifted and also have an IEP and or a 504. The issue was education path. If he was first designated gifted, they would provide the right level of education, then apply the IEP to allow accommodations. If not the accommodation would be in a lower learning room or in the class room. Those programs are to slow the process down for learning not accommodate a high learner with additional needs.
Once I asked the right questions, the test was given and with his anxiety he did terribly on the test, as I expected. Put him in a new room with a strange teacher and he would not pass any test, let alone a gifted test. So they said he does not qualify, we could reapply in a year. Dead end.
The teachers later explained that the testing for gifted given at the school was only one test format and the goals was to keep the number of children who qualify down, since they do not get the funding to the levels needed for these program. The other area is they are not equipped, nor do they want to have a mixture of a high class level of students and a child with accommodations. I think it was a fact that they would need to change the way they teach and did not desire to do that.
They did give me a clue, that there were 10 total tests that the state would recognize, the school just would not give them, they chose the hardest one to pass to keep the numbers down. Nor would they pay the $1200 to test him privately. They basically said again, if we could afford it we should try that route. If not, he would not be accommodated.
So this put us in a world of he is so advanced, but the tests that the school needs a grade on says he did not qualify …so your basically stuck.
Should we invest in the tests outside? Why would the school not offer the other tests? It lead me on another road in this long journey to figure out how to get the right education to my child that fits for him, not the school district process. I had ideas, armed with options and wanted to not let this go. I call the state education board and learned some interesting facts…..
I would ask each year the teacher if this was something that should be done for my son. Their answer was, oh you don’t want to do that. He is far too smart and you really do not want him labeled.
Now this was confusing to me. In the end we did have him tested outside at great cost and he was tested as and designated as gifted, it was needed for him to be in the right setting for a selectively mute child to excel, not what the school district dictates for main stream students. This designation put him on the correct path and he excelled. It took a lot of our effort and our money, but it was so worth it.
I had just finished my last blog on selective mutism and my gut feel that vaccines may be ground zero, when I was checking out from my chiropractor’s appointment. As I was at the check out there was a flyer taped up on the wall that read, “Are we poisoning our kids in the name of protecting their health? ” Now this caught my attention and I asked if she would make me a copy. It was from Generation Rescue, which I know nothing about and have never heard of before. www.generationrescue.org. But it laid out the case for autism rate in 1983 of 1 in 10,000 with 10 shots required. And in 2008, 1 to 150 with 36 shots required. In small print at the bottom was a thank you to Jim Carrey and Jenny McCarthy for their support of this organization. I had just seen her book on Autism at the Barnes and Noble when I was trying to find a book on selective mutism. Could we both be on the same path for different conditions? This info caught my attention.
I wonder has anyone looked at rates of selective mutism pre or post the vaccine increase? Is there a celebrity who had or child has selective mutism who can lend a face to this condition? The flyer talked about neurodevelomental disorders. Could selective mustim be part effected by vaccines?
Perhaps the autism focus and research will lead to answers that will gain traction with selective mutism? I know that my sons tourette sydrome acts up after vaccines are given, so why would it not create the issues with selective mutism that would prevent speech?
I also spoke to a gentleman at the airport who enlightened me that the sense of smell goes directly to the back of the brain is not influenced by areas in the front part of the brain. Thus my sons heightened sense of smell would not be influenced with his language part of the brain, that was effected be the select mutism. It is all small pieces of the puzzle I am still trying to put together.